Tag Archives: language

The Past Tense

Posted on February 1, 2011 by | Leave a comment

Last night as Emma was getting ready for bed, she said, “Remember, he took it.”  She looked over at me and then said, “He take – no, he took it?”

“Took.  He took it.  That’s right Em.  You had it right the first time.”  I was dismayed to hear her correcting herself.  I’ve never heard her do that before.  There have been countless times, Emma has used the past tense, but this was different.  She was using the past tense, then playing with the present tense as though she were trying it on for size and coming to the conclusion the past tense was what was needed.  And she was correct, which made it all the more incredible.

She smiled at me and repeated, “Remember when he took it.”

“Who, Em.  Who took it?” I asked.

She ignored me and continued, “Remember then you running – you ran.”

“You’re remembering our day at Bounce U, aren’t you?”  I said.

“Mmhm,” she answered.  “Mmhm” is new.  It’s something Emma says now instead of “Yes,” which she often said in the past, even when she meant “No.”  Now she says, “Mmhm,” or however you write out the sound of agreement people make which is less than “Uh-huh” and more than “Mmmm.”

“That was a fun day, wasn’t it?”

“Mmhm,” Emma nodded her head and added, “He took the picture!  You have to give it back.  You ran.  That’s funny.”  She sat up and began giggling.

I realize a little explanation is needed here.

On Emma’s birthday – which she shares with Martin Luther King – Richard, Joe, Nic and I took Emma to an indoor playground filled with inflatable structures.  It’s way out in Brooklyn and appropriately named, BounceU.  Emma loves the place and since we’d celebrated her birthday with a party and friends the day before, it seemed the perfect setting to spend her actual birthday.

Once we arrived, we ran into a friend of Emma’s from her school who was there with both her parents, Ryan and Susan.   Ryan had a camera with him, which Emma immediately wanted to take pictures with.  It quickly became a game with Becca’s good natured dad chasing Emma as she ran around taking shots of – the carpeting, people’s feet, her own face, etc. before he caught up with her and took the camera, often hiding it in places she could see.  Emma would then try to sneak the camera away while Ryan pretended not to notice, the whole thing was hilarious and Emma has referred to that day many times since.

Emma continued to giggle.  “He took it.  He want to take a picture.  You ran!”  She was laughing so hard she had to catch her breath.  “No!  You have to give it back!”  This last was said in a stern voice.  “Emma!”  Then she doubled over with laughter and said, “Remember?”

At this point I was laughing too.  “Em, that was such a fun day, wasn’t it.  And you got to spend time with Becca.”

“Yeah,” Emma said, before starting to giggle again.

Em & Becca

Emma’s self portrait

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Emma and her Singing

Posted on January 31, 2011 by | Leave a comment

“Sing Zoo Zoo Zoo with your mouth closed?”  Emma said this morning as she was getting ready for school.

“Good idea!” I said.  And then began to sing one of her favorite songs with my mouth closed.

She waited patiently until I had finished the first refrain and then said, “Emma’s turn!”

I knew, before I began singing that she meant she wanted to sing the song with her mouth closed, but since repeatedly correcting her over the years hasn’t made a dent in her continued use of “you” in place of “I” or “me,” I have begun taking her words more literally and seeing how that works.  Other than mildly irritating her, I’m not sure it’s making much of a difference.  The elusive pronoun continues to trip her up.

In addition there are words which she finds impossible to articulate.  A few of them can be found in another of her favorite songs – “Fabulous”.  Emma says – Sandy lot – or something that sounds suspiciously like that, in place of Fabulous as well as humming the word “imported” which is used repeatedly in the song, instead of making an attempt to say some version of the word.

Yesterday I tried more than a few times to have her repeat my enunciation of “imported” first by singing the lyrics “towels imported from Turkey, Turkey imported from Maine…” but when that didn’t help I tried to have her say “imported” all by itself.  I could see how hard she was trying, she watched my mouth as I said the word, she tried her best to mimic me, all to no avail and eventually wandered off into our bedroom where I could hear her singing loudly her own special version of the song, the tune utterly recognizable even as the words were not.

Richard found the lyrics of the song online and printed out several copies so each of us could review and sing along with her when she launched into yet another rousing rendition of it, which happens more than a few times over the course of a day.  Emma articulates a few lines of the song beautifully – “I want MORE!” and”Excuse Me Thank You” then lapses into her “Emmalish” – impossible for anyone to decipher.  Sometimes Emma will allow all of us to join her in singing, but often, particularly when it is her brother, Nic who is singing along she will stop abruptly and yell, “Nicky L. stop singing!”  or “Nic!  Stop talking!”

To which we respond, “No Emma.  Nic can sing too if he wants.”

“Forget it, it’s no fun now,” Nic will say as we wait for him to continue.  “She ruined it.”

Or if Nic does have the fortitude to continue, Emma will stand silently for a moment before seeking refuge in her bedroom and shutting the door.  It seemed as though it was as much a gesture of contempt for the whole unruly scene as a desire to escape the singing.  Nic usually shrugs and returns to whatever it was he was doing before the whole thing began.

I cannot hold a tune.  This is a fact I came to terms with early on in junior high school when I was contently singing along to “Angie” by the Rolling Stones and was ridiculed for my off key trilling.  My ego bruised, I was careful to hum or sing quietly under my breath or in the privacy of my own room.  Something I have continued to do ever since.  Emma however, did not inherit my tin ear.  Hers is the voice of an angel or Broadway singer, (depending on the song) as she belts out songs in decibels I didn’t know were possible.

The other week when we gathered to sing Happy Birthday, the one song anyone can sing off key with abandon, with no fear of ridicule, Emma out sang all of us put together.

“She’s  got a set of pipes on her,” Richard said, proudly when the song had come to it’s end.

“Yup.  She sure does,” we agreed.

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The Comedian

Posted on January 26, 2011 by | Leave a comment

Emma is a bit of a clown if she’s given any encouragement.
The other night, Emma nodded her head, while pursing her mouth in a kind of lopsided pucker and said, “I know.  You can’t go on the bike carousel.  It’s closed.”  Her tone was one of sorrow, as though she were sympathetic to the situation, but that it was ultimately beyond her control.  “I know,” she repeated.  “You have to wait.  It’s too cold for the bike carousel.”

Forget that I don’t know what “bike carousel” she was referring to.  The only one I know of is in Battery Park and it most certainly was too cold and snowy to go there.

Emma often carries on whole conversations with herself playing the role of child wanting to go somewhere and benevolent authority figure telling her she cannot do whatever it is.  There is a kind of mimicked sadness as she tells herself she cannot do something and even provides herself with perfectly plausible reasons why whatever it is, can’t be done.  It’s what they call in tennis, playing both sides of the net.

“I want to go on the bike carousel!”  Tone high-pitched, demanding, her face animated even lit up with anticipation and then the response, “I know.”  Sadness, apologetic, followed by the reason why this is impossible,  “You cannot go on the bike carousel, it’s too cold outside.”  Then she adds the facial expression with her mouth twisted to the side, puckered lips and the nodding of her head – it’s almost impossible to witness this performance and not see the comedy in it.

The other day we were all in the elevator with Emma when she went through a similar routine,  “I’m sorry,” she said.  “You cannot go on the swings.  That swing is for babies.  You’re too big.”  This last was said with a stern, though sympathetic tone.  “I want to go on the big swing,” this was uttered in a higher pitched voice.  “I know,” she said, nodding her head and giving the look, which made all of us start laughing.

“Emmy, you can’t go on the baby swing!  It’s too cold!” we said.

“I know,” she said sadly, nodding her head again.  It seemed there was a tiny hint of a smile though as she said it.  “You’re too big!”  Then she laughed.

“Em, make that face,” Nic prompted the other night.  He was referring to her puckered lopsided nodding of the head face.  But instead she just looked at him.

“Nicky!” she said sternly.  “Nicky!  Stop talking!”

“Hey Emma, go like this,” I encouraged, mimicking her expression.  When she finally complied she did it and then seeing all of us laughing she joined us and began laughing too.  “I love that expression, Emma.  You’re funny,” I told her.

“It’s funny,” she said.

On another occasion Emma burst into hysterical laughter for reasons none of us could decipher.  “Hey Em.  What’s so funny?” I asked.

“Justice!  Justice slammed the door,” she said before collapsing into peals of laughter.

“Was Justice being funny?” I asked, hoping to get more out of her.

“Yes!” But the moment was over and she wandered off.  Whatever scenario she was remembering, it was one we couldn’t share with her.

A few weeks ago when Richard and I went to her classroom with cupcakes to celebrate her birthday with her classmates we met Justice.  He and Emma sat together during story time.  On occasion one of them would reach over and stroke the others hair.  It was adorable.  Clearly they feel tremendous affection for one another and it was wonderful to see.  Then Justice began singing in a high pitched gravelly voice, making the teacher admonish him for making her ears hurt, as he and Emma laughed and laughed.

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“Why?”

Posted on January 20, 2011 by | 2 comments

Answering “why” questions is usually quite difficult if not impossible for many autistic children.  Emma is no exception.  Usually a conversation, which starts with “Why?” ends as abruptly as it began.

“Hey Em, why do you want to do that?”  “Why do you want to go there?”  “Why are you screaming?” “Why are you sad?” “Why are you hitting yourself?” etc.

99.9% of the time when asked “why?” Emma will either – walk away, not answer or will answer by repeating the question.

“Why?” Emma will respond in a high-pitched voice edged with anxiety.  “Why you hitting,” or “Why want to?”

Repeating the question does not produce positive results.  Repeating the question in a louder voice also does not make a difference.  After all there is nothing wrong with Emma’s hearing.  She hears the question she just has a difficult time responding.  So it was noteworthy when Emma responded to a “why” question the other day.

Emma wanted to have a pair of scissors so as to cut the gym mat we had tied around a standing beam for Nic to use when practicing his karate punches and kicks.

“Emma why do you want to take it down?” Richard asked.

“Because I want to jump into the swimming pool,” came Emma’s surprising response.

Now many of you reading this may be confused by her words, but to us, who understood she meant she wanted to turn the multi-colored gym mat on it’s other side, which happens to be all blue, and pretend it’s a swimming pool, we were in shock that she answered a “why” question and answered it so beautifully with a clear, concise, complete sentence.

When Richard told me I couldn’t believe it.  “Really?” I said, barely able to contain my excitement.  “Really?  She said because?”

Richard nodded his head.

“But that’s amazing!”

“Yup,” Richard said.

So Richard cut the mat down, told her to put on her swimsuit and let her “dive” into the “swimming pool”.

Ah life at the Zurcher-Long’s… it just never gets boring around here.

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Wake Up Calls

Posted on January 14, 2011 by | Leave a comment

Last night Emma came into our bedroom every few hours.  The first time was just after midnight, then again at 2:30AM or thereabout, again sometime after 3:00AM and once more, only I was so tired, I can no longer remember what time it was.  The last time she came in, standing beside the bed and looking at me, we told her she had to go back into her room and that we would come get her when it was time to wake up.  When she left, whispering, “Mommy, Mommy come into the other room,” I stayed awake waiting for her return.  Only she didn’t return.  She went back to her room and managed to fall back asleep, something I was unable to do.

So I’m tired.

And when I’m tired things can look a bit bleak.

I know this about myself.

This post is therefore about countering that exhaustion induced bleakness with a more balanced view of Emma and how far she’s come in the last year.

At this time last year, Emma was still wearing a diaper at night.  She was often awake in the middle of the night, unable to go back to sleep without one of us, usually me, lying next to her for the remainder of the night.  Or she would come into our bed, forcing Richard to sleep in her twin bed in her bedroom.  The feeling of utter exhaustion I am currently experiencing was commonplace a year ago.

In addition to the nocturnal awakenings, Emma had a habit of sucking on a strand of her hair, returning home with an encrusted lock, which I had to soak in lukewarm water before brushing out.  Emma was unable to shower by herself, brush her teeth, floss or brush her hair and needed reminders to go to the bathroom. Emma showed no interest in most toys and her language was not as complex as it is now.  Her utterances were in the three to five word category and often were difficult to understand.  Her difficulty distinguishing between pronouns such as “you”, “me”, “I”, “him” and “her” was all too apparent.  More often than not she referred to herself in the third person and often referred to others by calling them – “Emma”.

In the last few months, Emma has become enthralled with one of her baby dolls.  Each night for the past week, she comes home, bathes and washes her baby doll’s hair with shampoo, then wraps her in a towel and puts her to bed.  Her pretend play continues to be somewhat literal, in other words she doesn’t pretend to talk for her doll, she isn’t able to “name” her dolls beyond calling them things like:  doll, girl, baby, etc.  But Emma is showing an increased interest in playing with them, taking on the role of “mother” and spends longer periods doing “motherly” things with them.
This is the first year Emma has shown even a remote interest in Christmas and likewise with her birthday.  She has been talking about her birthday and the party we are giving her for over a month now.  Sadly, few children are able to come to her party, as it falls on a three-day weekend and almost everyone is busy or away.  But despite this, we are making sure she and her birthday are celebrated.

Sometimes it takes exhaustion and numerous wake up calls to remind me of just how far Emma has come.

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Returning Home

Posted on January 13, 2011 by | Leave a comment

When I finally returned home – after midnight – I crept into both the children’s rooms and stood at the foot of each of their beds for a moment.  Emma lay sprawled out one leg thrown over her duvet despite the cold, one hand clutched a shred of her blanket.  I watched her for a moment, her blonde hair fanned out on the pillow, her chest rising and falling with each breath.

Richard and the children returned to New York the week before me, though it felt as though I hadn’t seen them for a month.  The next morning Emma appeared in our bedroom at 6:29AM.  “Hi Mommy,” she said pointing at me.  “It’s Mommy!  Mommy’s back!” she cried, before climbing into bed beside me.

“Emmy!”  I answered, hugging her.  “It’s so good to see you!  I’ve missed you.”

“Missed Mommy!” Emma said.  Then she gave me a kiss on my cheek.

The following night I read to Emma before turning out the light and leaving.  Emma began breathing rapidly and making little panting noises, expressing her distress at my leaving her.

“It’s okay, Emma.  I’m not going anywhere.  I’ll be in our bedroom when you wake up tomorrow morning,” I tried reassuring her.

“Mommy!  Mommy stay!”  Emma cried.

“Em, I’m not going anywhere,” I repeated.  I’ll be right here.  It’s okay.”

Unconvinced, Emma pointed at me, “You,” she said, then pointed to herself, “and me, in Emma’s bed.”

“Okay Em.  I’ll stay here for a few more minutes and then I’m going to go into my own room.”

By the time I left her, it seemed she had finally fallen asleep, only fifteen minutes later she appeared in our bedroom.  “Mommy!”  She cried.

“It’s okay Em.  I won’t leave.  I’ll be right here when you wake up.”

“Mommy come.  Mommy come into the other room,” Emma pleaded.

I returned her to her bed and sat with her for close to an hour before telling her I was going to go into our bedroom, that I was going to be there when she woke up, that I wouldn’t leave.  “Okay,” she whispered.

Within five minutes she was back in our bedroom crying for me.  I knew how distressed she was.  I knew she was worried I was going to leave again.  I knew she just needed reassurance and eventually she would understand that I wasn’t going anywhere.  But I was also utterly exhausted and by this time it was after midnight.  I could feel my patience dissipating.  “Emma, you have to go back to your bed.  You have to trust me that I’m not going to leave.  I will be here in the morning.  I have to go to sleep now and so do you,” I said.

When Emma didn’t return to her bed, but instead stood staring at me unconvinced, I got up and said, “Emma!  Go to bed NOW!”

Emma turned away.  “Mommy come!”

I followed her into her room, sat on the edge of her bed and said, “Don’t worry, Emma.  I’ll be in the other room when you wake up.  I promise.”

“Okay,” Emma said, holding my arm tightly.

“It’ll be okay,” I said.

Emma nodded her head, “It’ll be okay,” she repeated, not letting go of my arm.

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A “Conversation”

Posted on January 6, 2011 by | Leave a comment

“Hi Mommy!”  Emma said this afternoon into the phone.

“Hi Em, how are you?”

This is a standard question which Emma never fails to answer with a cheerful, “I’m fine!”

“Did you have a good day at school?”  I asked, knowing that she did not have a good day.  In fact, Emma’s teacher wrote us an email describing how Emma was unable to focus, wept for a good part of the day, cried for me and zoned out for much of the rest.

“No you cannot go on the baby swing.  It’s too small!”  Emma said in answer to my question.  “You have to wait over here!  You have to go on the big swing.”

I knew what Emma was referring to as she was picking up on a “conversation” we’d begun before she flew back to New York.  I have no idea why the swing in “Seal Park” was occupying her mind, but it evidently was.

“That’s right, Em.  You’re too big for the baby swing!”

“You have to wait.  You have to swing on the other one,” she continued.

“How was school today, Em?” I asked, hoping to bring the conversation back to the present.

“It’s too small for you!”  Emma laughed.  And then she said something else, but she was wandering away from the phone so it was impossible for me to hear what it was.

“Hey,” Richard said into the phone.

“Was she okay when she came home?” I asked.

“She’s been great.  Happy as a clam,” he answered.

Okay then.

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“Sorry Bubbles”

Posted on January 5, 2011 by | 2 comments

Emma calls the stars in the sky – Sorry Bubbles – it has a certain poetic beauty to it.  She used to call fireworks, rain and the noise motorcycles make, “bubbles”.  But “sorry bubbles” remain my favorite.  This New Year’s Eve she referred to the fireworks, which showered Aspen Mountain as “fireworks”.

“Look!  Look at the fireworks!” she cried.  Then she made noises, which sounded a bit like the noise fireworks make.

“Does the noise bother you?” I asked.

“Yes!” she said, covering her ears.

“Does it scare you?” I asked.

“Noooo!” she said, laughing.

“Do you want to go outside with Daddy and watch them?”

“Do you want to stay inside the boy’s house?” she answered.  Which meant she wasn’t asking a question, she was stating a fact.  She wanted to stay in our friend’s house and most definitely did NOT want to go outside in the 10 below zero cold to watch the fireworks with her Dad.  Richard stayed close to the house and occasionally jumped up and down to keep himself warm.

“Dance, Richard!  Do your dance,” Nic’s friend, Eli said, from the warmth of the kitchen.

“Daddy’s jumping!” Emma commented.

“He’s trying to stay warm,” we told her.

“Daddy wants to see the fireworks.  Daddy’s cold,” Emma said.

Later as we made our way back to our house and after the fireworks had ended, Emma looked up at the sky and said, “Sorry bubbles!  Look at sorry bubbles!”

“Is that what you call the stars, Em?” I asked, confirming what I suspected.

“Yeah!”

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Making Sense of It All

Posted on December 31, 2010 by | Leave a comment

Yesterday as I was driving the children with all our ski gear to the slopes, Nic said, “Mom, did you get me a new pair of poles?”

“No Nic, I didn’t,” I said.  “What’s wrong with your poles?”

“I can’t use them any more,” he answered.

“Why not?”

“The baskets fell off.”

“What do you mean the baskets fell off?”  I asked with growing irritation.

“I don’t know.  They fell off.  I can’t ski with them.”

I began imagining the long lines at the rental shop at Buttermilk, how we were suppose to meet Emma’s Challenge Aspen ski buddy in less than five minutes and we were just leaving the house.  I said as much to Nic who now sat quietly in the back seat staring out the window.

“Mommy’s so upset,” Emma’s voice could be heard saying, from the backseat.  “Nicky’s so upset.  Mommy’s angry.”

“Oh Em,” I said.  “I shouldn’t have gotten angry just now.  I’m sorry Nic.  Don’t worry, we’ll borrow a pair of poles and get you a new pair this afternoon.  Okay?”

“Okay,” Nic said.

“Hey Em?  Are you excited to go skiing?”  I asked.

“Yeah.  Ski with Mommy and Nicky and Matt!” Emma said.  “Mommy’s upset.  Nicky’s upset.  Nicky wants to jump off the diving board.  I’m sorry, it’s closed.  Nicky’s crying,” Emma continued cheerfully.

This kind of dialogue from Emma is typical, she applies whatever logic she can to a given situation, usually however, it’s incorrect.  She will come up with reasons for someone’s upset with things that have recently upset her.  If Emma doesn’t get to the Aspen Recreation Center by a certain time during the week, the diving board is closed and she cannot jump off it.  As jumping off the diving board is one of her favorite activities, she is upset when she realizes she won’t be able to.  That Nic is now upset, it stands to reason, he must be upset as she is, about the diving board.

“I don’t care about the diving board Emma,” Nic grumbled.  “And I’m not crying,” he added.

“Hey Em.  Nicky’s not upset about the diving board.  Nicky’s upset because I was cross with him about his ski poles,” I explained.

“You got that right,” Nic muttered, giving me a grin.

“Nicky’s upset, Nicky’s angry, Mommy’s so upset, Mommy’s angry, Emma’s upset, Emma wants to jump off the diving board,” Emma said.

It’s a bit like watching an Olympic Sporting Event where the newscaster does an ongoing narration of the events as they develop.  Only Emma is reporting on events with reasoning which has nothing to do with what’s actually going on.

“Mom, make her stop,” Nic said irritably.

I began laughing, “I can’t Nic.  She’s just trying to make sense of it all.”

“But it doesn’t make any sense,” Nic said.

“It does to her,” I answered.

“Whatever,” Nic said.

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All Together

Posted on December 20, 2010 by | Leave a comment

Richard, Nic and Emma finally arrived in Aspen after a series of mishaps Thursday evening.  Emma saw me first and ran, as though heading for my arms, but at the last second, veered away, saying, “Hi Mommy!  It’s Mommy!”  and jumped up and down, pointing at me from about five feet away.

I caught her and said, “Hi Em!  Remember, arms around and squeeze!”  Which she did as I kissed both her cheeks.  I have been working with her on the art of hugging family members and though she hasn’t got it down yet, she at least understands that if you put your arms around the other person and squeeze, that will pass for an acceptable hug.  It’s a start, anyway.

Richard and Nic, on the other hand, returned my embraces easily and without hesitation.   This is my family and I am ecstatic to have them here with me through the holidays.

While we are here, Em is skiing with a buddy provided by Challenge Aspen.  (Except for today when it is so messy out with rain, slush & snow even Emma seemed less than enthusiastic.)  “Look!  It’s raining!  We cannot go skiing when it’s raining,” she said upon waking up this morning.  “That’s just silly!”  she added, pointing out the window at the rain.  And indeed, it did seem to be a bad idea, though there were the intrepid few, who defied all logic and were on the slopes, my brother and his wife being two of them.

I am relieved Emma was not among them, however, as the patches of sheer ice, mixed with the slush caused by the milder temperatures and rain, made for some interesting driving along our road.  I can only imagine what the skiing was like.

“Would you like me to read to you?” I asked Emma earlier this morning.

“Yes,” she said, sitting between my legs on the couch usually taken over by the dogs.  Emma pulled a blanket over us and leaned her head back against my chest.  I have been reading Balto, the Siberian husky whose statue forever memorializes him in New York City’s Central Park.  Emma, despite her fear of dogs loves the statue in Central Park and often climbs on it, as the photo below shows.

Emma seemed to enjoy the story and listened quietly as I read the last twenty pages to her.  When we finished the story, she looked out the window and said, “No, not going to go skiing!”  Go swimming at the ARC.  Go jump off the diving board into the cold water!”

“Yeah.  Okay.  That sounds like a good plan,” I said.

“Go swimming now,” Emma said.  Upon seeing my hesitation, she said, “You have to ask Mommy.  Mommy!  Can I go swimming at the ARC?”

“Em, you’ll go later, it’s not open yet.”

“You have to wait, it’s broken,” she said, looking at me to see if she’d gotten it right.

“No, it’s not broken, it’s just not open yet.  It’s too early,” I explained.

“It’s too early,” she said.  Then she peered out the window at the morning light and said, “You have to wait til it’s light out.”

“No, Em.  It’s light out, see?  We can see the mountains, but it’s too early for the pool to be open.  People are just waking up and having breakfast…”

“Later,” Emma said, clearly not interested in my long-winded explanation.

“Yes.  Just a little later.”

“One minute,” Em said.

“More than one minute,” I said, wondering if I should use the opportunity to bring over a clock and discuss the concept of time.

“Later,” Emma said with finality.

“Yes.”

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The Phone Call

Posted on December 11, 2010 by | Leave a comment

I hadn’t spoken to Emma in two days as I’ve been away on business. It’s always difficult traveling, leaving Richard, Nic and Emma behind. But it’s particularly tough not being around Emma as her phone skills are lacking. With Nic I can talk to him, ask him how his day was and feel a modicum of connection. But with Emma it’s more elusive. I called the house a little while ago, having not changed the time zone on my laptop, forgetting it was just 7:00AM on the east coast and Emma may still be asleep what with her new “sleeping til it’s light out” schedule and woke everyone up. I was hoping to exchange a few words with Em, though really would have felt happy to hear her sweet voice, but instead heard her murmur something in the background as Richard said, “Why are you calling so early?” in a groggy tone.
“Oh no!” I said. “What time is it?”
“It’s just 7:00,” Richard answered. “I’ll talk to you later.” There are some things years of marriage and no amount of love can penetrate – sleep.
An hour later Richard texted me saying everyone was up, so I called again.
“Hi!” Richard answered the phone. In the background I could hear Emma’s baby doll humming to the tune of “Row, row, row your boat.”
“Hi!” I said. “What’s Emmy doing?”
“She’s giving her baby doll a bath.”
“Where?”
“In the kitchen sink,” Richard said. I could hear the baby doll humming again, indicating Emma had just pressed her belly button to make her do so.
“Really?”
“Yeah, she washed her hair with shampoo and rinsed it out. I wonder how long it can stay in the water before it short curcuits,” Richard said.
“I don’t know. But that’s pretty great.”
“Yeah, she played with it all last night too. Now she’s put a towel on the floor and is drying it off. Hey Em! Come say hi to Mommy!”
I could hear Emma talking to her baby doll and then her footsteps running toward the phone. “Hi Mommy!” she said, still not quite into the phone.
“Hi Em!”
“Mommy’s staying at Granma’s house,” Emma said sadly.
“Yeah. I’m at Granma’s house. How are you?”
“Bye Mommy!” Her voice was heard to say as she sped off. I could hear the baby doll launch into another rendition of Row, row, row your boat in the background.
“Hey,” Richard said.
“Oh, I barely got to speak to her,” I said.
“Yeah, well you never know how long she’ll talk,” he said.
“I know. You have to get everything in quickly.”
For today, my brief conversation will have to do. Knowing Emma is playing with her doll makes me happy. Richard is hosting a sleep over with one of Nic’s friends, brave man that he is. Tomorrow Emma takes her gymnastics class and I will wait to hear how everything went.

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On The Right Track

Posted on December 2, 2010 by | Leave a comment

This morning Emma’s scooter could be heard shooshing through the hallway toward our bedroom. “Hi Mommy!” she said as cheerful as ever, despite the fact it was 4:20AM. I groaned inwardly but managed to meet her cheerfulness with a somewhat less convincing, “Hi Em.” I looked over at her, “It’s too early. You have to go back to your bed.”
Without missing a beat she made a u-turn on her scooter and could be heard to say as she retreated, “You have to go back to sleep now. You have to wait til it’s light out. Then you can see Mommy!”
I literally held my breath, waiting for the screams to shatter the early morning quiet. “Do you think this will really work?” I asked Richard who appeared unconscious.
“Yeah,” he muttered, not moving a muscle.
I watched him for a few seconds for any sign of movement, any sign, which could be taken as encouragement for more conversation. When none came I stared at the ceiling marveling at the silence. Was it really possible? Could it be that she had returned to her room and was lying in her own bed quietly waiting for it to be “light out”? It seemed impossible. This was the last thought I had before surrendering to a fitful sleep. Every 20 minutes or so I woke up, listening for the cries, which never came.
At 6:30AM I rose. As I went into Nic’s room to wake him, I peered around the corner into Emma’s room. It was still quite dark so I didn’t trust what I was seeing at first. There she was, sound asleep in her own bed. I was astonished. So much so that I stood there for several seconds. By the time I’d woken Nic, turned on the lights in the kitchen and dining room, Emma shot out of her room on her scooter looking groggy, but pleased with herself. “Now you can see Mommy! Good job waiting til it’s light out,” she said, congratulating herself.
“That was really terrific Em,” I told her. “Not only did you go back to your own bed without crying, you went back to sleep!” I knelt down to give her a hug. She wriggled away from me, but I caught the smile on her face. “I’m proud of you, Em.”
This is the FIRST time Emma has gone back to bed without –
a) insisting one of us accompany her,
b) screaming when one of us dared not accompany her
c) coming back to our bedroom repeatedly.
“Did you notice she didn’t have Cokie with her when she came into our bedroom?”
“I didn’t think you were even awake, let alone noticing things,” I said.
“Of course I was awake.”
“She’s never done this before. It’s really incredible!”
“We’re on the right track,” Richard said.

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The School Bus

Posted on November 24, 2010 by | Leave a comment

We received a call yesterday from Emma’s school saying the bus driver had yelled at Emma in front of the other children when she was getting off the bus. The driver claimed Emma had spit in her face. Richard and I were incredulous as neither of us have ever seen Emma spit nor did I think Emma was physically capable of projecting a pool of saliva from her mouth at a target, human or otherwise.
When we asked Emma what happened on the bus, she replied, “Emma so sad. You make Emma cry. Emma want to get off the bus.”
“Why did you want to get off the bus, Em?”
“Lady. You have to ask the lady. Lady, can I get off the bus?” Emma said while wrapping a strand of hair around and around her finger.
“What did the lady say?”
“NO! Emma sad.”
“But Em, what happened?”
“Emma go to gymnastics?” She looked at me and nodded her head.
“Yes, Sweetie. You’re going to gymnastics this afternoon,” I said.
By the time the bus arrived, Richard and I were no clearer on the actual events than before. As with many autistic children, their (in)ability to speak is much more than a language delay. The language they have is often garbled, confused and the thinking difficult, if impossible to follow. Emma’s reference to gymnastics in answer to my request for clarification as to the events on the bus suggested she feared she wouldn’t be able to go to gymnastics as a result. She had done something wrong, someone was angry, her beloved gymnastics would be taken away. Even after I reassured her she would be attending gymnastics, she continued to ask several more times.
Last night Emma woke me at 1:47AM screaming, “Mommy! Mommy! Mommy come!”
When I went into her room I told her if she continued to scream we would not let her go to gymnastics, something she’s been looking forward to for several days. It does make sense how she might conclude gymnastics was up for grabs, given the upset on the bus.
When the bus arrived we asked what happened.
The driver leaned forward and said, “She spit in my face. I told her that wasn’t okay.”
“She spit in your face?” I repeated.
“Yeah. In my face. She sits there spitting on the floor and then blames another kid, but it’s not him that’s doing it, it’s her. She’s the one who’s spitting,” the driver said.
“It’s hard for us to believe this, as we’ve never seen her spit at anyone,” Richard replied.
“Yeah, well I think she picked it up from the other kid, cause he use to spit, but now she does more than him and blames him.”
“Okay. Then what happened?”
“I told her – it’s not okay. You can’t do that,” the driver said. “She went like this,” the driver took her hand put it to her mouth and flicked out with her fingers. “She spit at me and I told her you can’t do that.”
“Okay, do you mind if I get on the bus to talk to her?” I asked.
The bus driver nodded her head.
“Em, you can’t spit. Do you know what that means?” I asked.
Emma stared at me and said, “You have to ask Mommy.”
“No Em. You just can’t spit. You have to keep your fingers out of your mouth. You have to keep your gum in your mouth. Okay?”
“Okay,” Emma answered.
“She doesn’t listen,” the bus matron said.
“It’s not that she doesn’t listen, it’s that she doesn’t understand what’s being said to her,” I began.
“Yeah, but she doesn’t listen,” the matron said, shaking her head and staring at Emma who was now seated directly behind the driver with her seat belt buckled.
“She doesn’t understand what’s being said to her, it’s different than not listening,” I said.
“No I know. I understand these kid’s situation. I’ve been driving kids like this for a long time,” the driver said. The matron stood by shaking her head. As all of this was going on one of the children kept getting up from her seat and standing in the aisle.
“Logan! Sit back down!” the driver said, loudly.
“Logan! Sit down!” Emma parroted.
“She doesn’t understand why you’re angry with her. She doesn’t understand what it means to spit at someone,” I said. “Yelling at her won’t make her understand any better.”
“Oh no. I don’t yell. I never yelled at her,” the driver said. “I just told her like this,” she then spoke in a kind voice, “You can’t do that, it’s not okay.”
Richard and I looked at one another. “Okay, well please tell us if anything like this happens again.”
“She’ll have a new driver after the holiday,” the driver informed us. “But I know her, she’s a friend of mine, I’ll tell her what’s going on.”
By the time the bus left with Emma inside it, Richard and I stood together and watched it go. I felt a familiar constriction in my chest. How can we know what really happened? Our daughter is incapable of telling us her version of what occurred, the school wasn’t on the bus until after the “incident” happened, though they did witness the driver shouting at Emma. The accounts from the driver and the bus matron, who appear to have little if any knowledge of autism and certainly no training in autism, are all we have.

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Milestones and Miracles

Posted on November 21, 2010 by | 1 comment

As we sat at the dinner table last night celebrating our dear friend Claudie’s birthday, I saw Emma ride up to Nic on her scooter and stand in front of him as he sat on the couch listening to music on his iPod.

“Hey Nic!” she said.

It was very unusual for Emma to go up to Nic and speak to him so directly so I nudged Ariane who was sitting next to me, and pointed in their direction.

“Hey Nic!” Emma repeated. “Will you come to mommy’s room with me and watch Elmo?”

We were absolutely floored. Ecstatic. Choking up with emotion. Not only was this one of the longest and most articulate sentences Emma has ever spoken, it was also directed at Nic, asking him to do something together with her.

For any parent of two normal children, this would be something you take totally for granted — something you would have witnessed twenty million times by the time your children were 10 and 8 years old. For us it was first, a true milestone, as significant as when Nic and Emma took their first steps or spoke their first words. More than that, it was something we had hoped and prayed would happen for such a very long time. Something we feared might never happen.

It was a miracle.

We looked at our guests with our mouths hanging open in shock and wonder, then began hugging and kissing each other in joy and gratitude. It was such a special moment, made even more special by the great good fortune of being able to share that wondrous milestone with such special friends. Claudie said it was the best birthday present she ever had. Elaine knew exactly what we were feeling and how significant it was, having experienced parental challenges so much more arduous and painful than anything we have weathered.

I went with Emma and Nic into our bedroom and helped her put the Elmo DVD on, then spied on them from around the corner, my ears perked up for any more dialog that might be forthcoming. They just sat together silently, watching Elmo, Nic barely able to tolerate it, but being such a great sport, Emma looking so happy in his company.

Eyes were teary as we put the candles on Claudie’s cake, then called for Nic and Emma to join us. Emma came running in like a freight train, since two of her favorite activities in the world are singing Happy Birthday and blowing out candles. True to form, Emma led the chorus, singing as loudly and cheerfully as always. When the song finished, Claudie started to blow out the candles but Emma leaned across the table and blew out most of them first.

“Emma, those are Claudie’s candles,” Ariane admonished, then asked Claudie if she wanted us to re-light them.

“No,” Claudie said, “I already made my wish.”

And we had one of ours granted.

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A Phone Call

Posted on November 4, 2010 by | Leave a comment

The other day I received a phone call from Joe.  “We’re at the playground.  Emma asked to speak with you,” Joe said.

I could hear Emma crying in the background.  “You have to ask Mommy,” I heard her say.

“Hi Em.  What’s going on?” I asked.  I could hear her breathing into the phone.

“Mommy!  You have to ask Mommy.  Mommy?”  Emma said.

“What is it, Em?  Are you okay?”

“Mommy can I take off my other shoe?” Emma sobbed.

“Oh, Emmy.  It’s too cold outside.  You have to keep your shoes on, but when you get home you can take them off,” I said.  Emma’s wails of despair rose and fell.  “Em, it’s okay.  It’s going to be okay.”

“Mommy?  I want to take shoes off!” She cried.

“I know, Sweetie.  But it’s really cold out and you can’t take them off.  When you get home you can.”

“Mommy!  Mommy!  Come!”  Emma said.

I could hear Joe reasoning with her, offering her choices.  Asking her if she’d like to go to the bookstore or stay in the playground.  When she chose the playground he asked her if she’d like to go home and take her shoes off or stay in the playground and keep them on.

“No!  Stay in playground,” Emma said.

“Okay, she’ll be okay,” Joe assured me before hanging up.

I can count on one hand how many times I’ve had anything resembling a phone conversation with Emma.  That she asked to call me was exceptional.  Once the call was made she stayed and listened, didn’t like my answer, but responded to it without walking away.  I know it may seem I’m clutching at straws here, but the telephone is an abstract concept.  Add to that, the fact Emma has difficulty communicating through language and the phone becomes a formidable object.

Years ago when I was in Paris visiting my aunt, the phone rang while she was in the bathroom.   She asked me to find out who was calling.  I was absolutely terrified to pick up the receiver.  What if they spoke too quickly for me to understand?  What if they asked me a question I didn’t know the words to formulate a proper answer?  Hearing a voice without accompanying gestures or facial expressions to aid me made communicating in a language not my own all the more daunting.

Yet Emma asked Joe to call me.

It was a tremendous step forward.

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